Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns

Abstract

BACKGROUND: Long delays between parents' initial concerns about their children's development and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although discussions between parents and providers about early ASD concerns can be difficult, they are critical for initiating early, specialized services. The principles of shared decision-making can facilitate these discussions. This qualitative study was designed to gain insights from parents of young children with ASD about their experiences communicating with primary care providers with the goal of identifying strategies for improving conversations and decisionmaking regarding the early detection of ASD.METHODS: Three 2-hour focus groups were conducted with 23 parents of children with ASD ,8 years old. Qualitative analysis employed an iterative and systematic approach to identify key themes related to parents' experiences.RESULTS: Eight themes related to communication about early ASD concerns emerged: characteristics of the child that caused parental concerns, the response of others when the parent brought up concerns, how concerns were brought up to the parent by others, parental responses when others mentioned concerns, information seeking, barriers to and facilitators of acting on concerns, and recommendations to providers. Parent responses suggest the need for increased use of shared decision-making strategies and areas for process improvements.CONCLUSIONS: Primary care providers can play a key role in helping parents with ASD concerns make decisions about how to move forward and pursue appropriate referrals. Strategies include responding promptly to parental concerns, helping them weigh options, and monitoring the family's progress as they navigate the service delivery system.WHAT'S KNOWN ON THIS SUBJECT: Challenges in parent-provider communication about early autism spectrum disorder (ASD) concerns can prevent young children from accessing appropriately specialized treatment at the age when it may be most effective. The process of shared decision-making can lead to more productive discussions and consensus building.WHAT THIS STUDY ADDS: This qualitative study provides insights from parents of young children regarding barriers to and facilitators of acting on their early concerns about ASD. Specific recommendations for shared decision-making strategies that may increase early access to ASD-specialized services are provided.

Treating Externalizing Behaviors in Toddlers with ASD Traits Using Parent-Child Interaction Therapy for Toddlers: A Case Study

“…In addition to the challenges associated with having the core characteristics of ASD (e.g., social and communication impairments, and restricted, repetitive behaviors, interests and/or activities), as many as 27% of children with ASD have clinically significant externalizing behaviors (Hartley et al, 2008). Externalizing behaviors, such as aggression (e.g., hitting and biting others), severe tantrums, and head-banging, are often the first reason that parents of children with ASD seek professional assessment and treatment (Locke et al, 2020). Often parents seek professional assistance well before an ASD diagnosis is received, because externalizing behaviors are easily observed, both by them and others (e.g., childcare workers; Locke et al, 2020).…”

“…Externalizing behaviors, such as aggression (e.g., hitting and biting others), severe tantrums, and head-banging, are often the first reason that parents of children with ASD seek professional assessment and treatment (Locke et al, 2020). Often parents seek professional assistance well before an ASD diagnosis is received, because externalizing behaviors are easily observed, both by them and others (e.g., childcare workers; Locke et al, 2020). When externalizing behaviors persist, they can have significant negative impacts on family functioning, parental wellbeing, and children’s social-emotional and academic functioning (Lecavalier et al, 2006; Storch et al, 2012).…”

“…Some manualised parent training programs, such as Primary Care Stepping Stones Triple P program and Parent-Child Interaction Therapy, originally developed for children without ASD, have been shown to be effective in treating externalizing behaviors in children with ASD (Ginn et al, 2017; Tellegen & Sanders, 2014). While available evidence points to the effectiveness of parent training programs for children with ASD, most of these programs were developed for children aged 2 years or older and the onset of externalizing behaviors in children with ASD is in many cases earlier than 2 years (Guinchat et al, 2012; Locke et al, 2020). Given the known impacts of early onset externalizing child behaviors on both later child outcomes (Mandell, 2008) and parental wellbeing (Lecavalier et al, 2006) there is obvious value in providing earlier interventions for young children with ASD and externalizing behaviors.…”

Improving autism and developmental screening and referral in US primary care practices serving Latinos

“…Thus, improvements in screening might aid earlier identification. However, improving screening is not enough: working with PCPs regarding how to talk about screening with families, where and how to refer families with positive screening test results, and how to connect families with intervention resources is also necessary to improve access to ASD care (Hyman et al, 2020; Locke et al, 2020).…”

Editors’ Note and Prologue

“…Acute care in the emergency department (ED) for children with ASD can be particularly challenging because of behavioral issues of children with ASD and characteristics of staff in the ED. In the next article, Locke and Ibanez et al 18 used qualitative methods to report facilitators of and barriers to the implementation of shared decision-making to promote early detection of ASD in primary care. Specific strategies are included to promote communication and recommendations for next steps.…”